• by Daniella Koren , June 26, 2012

In today’s fast-shifting patient-centric world, do we know what patients with serious diseases really want when it comes to information about their health? And are pharmaceutical companies listening?

When Wendy S. was diagnosed with metastatic breast cancer two years ago, she listened carefully to what her doctor told her about her condition and treatment options, then turned to the Internet for more information. What she found was mostly for people she calls “survivors”—women with earlier-stage breast cancer, who may experience long remissions or even cures. “That’s not going to happen to me,” she says frankly, “but I am surviving, one day at a time. Where’s the information for people like me?”

Good question, and one that led me to others: What kinds of information do people with serious diseases want? How do they want to get it? And are pharmaceutical companies responding?

We did some primary research, and here’s what we found:

Tailoring is key 

Patients want only information that applies to their situation, as Wendy’s statement shows. Patients say that websites and brochures for their type of cancer were not helpful because they were too general or had little information about their particular form of the disease.

Pharmaceutical companies often don’t do a good job of tailoring the message, even with their unbranded disease education websites. A study by market research company Mintel found that patients are increasingly looking for information on their own to choose healthcare treatment. If what they find is information that doesn’t apply to them, they’re going to abandon it. While it may not be practical to provide detailed information about every form and stage of a disease, an overview of a condition should at a minimum contain links to advocacy groups for more information.

Make information bite-sized

Getting diagnosed with cancer makes nearly everyone feel anxious, which makes it difficult for patients to understand and remember everything they’re told. A recent study published in the Journal of Clinical Oncology found that most patients who had just been told they had cancer remembered less than half of what their doctors had said.

Pharmaceutical companies should provide disease and treatment information in multiple formats, from a one-page sheet that doctors can give to the newly diagnosed, to more detailed brochures and websites. That way when patients are ready to learn more, they can. 

Beware of unintended finger-pointing

Patients may interpret lifestyle advice as implying that they caused their own cancer by making unhealthy choices. When pharmaceutical companies’ unbranded websites include lifestyle advice, they should be careful to position it simply as steps that can help people feel better moving forward.

Create message boards

Patients want to hear from people who’ve “been there, done that.” Pharmaceutical companies typically don’t offer patient message boards, fearing negative posts about their products or side effects. But moderated message boards, where questions and comments need to be approved to be posted, should be considered. This could give patients a sense of community that would include the companies that make the medication they take.

Don’t forget family members

Disease information from pharmaceutical companies for family members is often lacking, and content for caregivers may simply repeat patient information, replacing the word “you” with “your loved one.” Pharmaceutical companies should gear more information specifically to family members and other caregivers.

Provide help with organization

Dealing with a serious illness takes a huge amount of time and organizational skills on the part of patients. A patient may see several doctors, visit an infusion center for his or her treatment, consult a nutritionist, and get help from a therapist. This can generate a mountain of paperwork, not to mention insurance forms, all of which the patient should retain. 

Keep the message hopeful

The information that pharmaceutical companies create for patients is often very clinical in nature, sometimes adapted only slightly from what they provide to healthcare providers. Patients are individuals, with jobs, families, hobbies, and unique likes and dislikes. In other words, they’re just like you and me, but they’re also living with the physical and emotional consequences of a serious illness. We should keep that in mind.

Give patients what they want

From the patient point of view, having pharmaceutical companies pay attention to the kinds of information they want can make them feel like they’re being heard. And for pharmaceutical companies, it’s just plain good business.